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Doctors, nurses and therapists from Hong Kong, China and the United States huddle around the bed of a three-week-old baby Chinese girl who was born with spina bifida. She has been operated on a week after birth, and the visiting medical team at Suzhou Children’s Hospital are there to discuss the best course of action for the baby.

After their examination, the doctors predict that with the right care the girl may have a 95 per cent chance of walking and finishing high school. “When the Chinese doctors heard this ... it seemed like a miracle to them,” recalls Dr John Ngan, founder of Hong Kong-based charity MedArt, and organiser of the city’s first spina bifida conference in late September. Ngan took 80 doctors to Suzhou.

“They don’t have the perspective of how the child will grow up. It made them realise that dealing with spina bifida isn’t just about doing surgery, but the need to plan, monitor their progress and detect complications earlier so that they can be managed,” the American-trained urologist explains.

The US doctors point out the girl’s legs may grow abnormally, but with regular monitoring the problem can be corrected with splints. Another doctor recommends checking the girl’s kidneys regularly; if all goes well she can have full kidney function and avoid incontinence.

Spina bifida is a debilitating condition. The bones of the spine don’t form properly around the spinal cord and surgery is needed to close it, or the baby has less chance of survival. There can be a build-up of fluid in the brain (hydrocephalus), and little or no feeling in the legs, feet or arms. There could be bladder or bowel problems, causing incontinence, and curvature of the spine.

According to the International Federation for Spina Bifida and Hydrocephalus, 80,000 to 100,000 babies are born with the condition every year, though the true number is probably higher, as not all cases are recorded.

Ngan says it has been proven that in China, Henan province has the highest number of spina bifida cases, followed by Shanxi province and the city of Wuhan in Hubei province – probably due to genetics.

Dr Wang Xiaodong is a paediatric orthopaedic surgeon at Suzhou Children’s Hospital, where MedArt conducts its spina bifida operations a few times a year. The charity has helped more than 200 children since 2003.

Since 1987, Wang says, the central government has run a programme that provides expectant mothers with regular free checks. They are encouraged to take folic acid to significantly reduce the chances of their fetuses developing spinal deformity.

When parents are told their baby has spina bifida, they are very scared

Dr Wang Xiaodong

After ultrasound and MRI scans, Wang says, some spina bifida cases are aborted at three or four months, but there are closed spina bifida cases, where the baby looks normal but under the skin the spine is not closed, and the problem is detected only years later from the child’s physical and mental development.

“When parents are told their baby has spina bifida, they are very scared,” says Wang. “If there is a clear diagnosis, the baby is sent to our hospital for consultation and, in some cases, MedArt helps out.”

However, Wang concedes China’s doctors need more education and equipment to deal more effectively with spina bifida cases. He says the country needs another 10 years to catch up, which is why the September conference and site visit of medical experts was a crucial learning experience.

During the conference, participants got a chance to meet Dr Timothy Brei, who was born with spina bifida but beat the odds to live a productive life, thanks to parents who insisted he be as independent as possible from an early age.

Brei, 60, consults parents at Seattle Children’s Hospital and is medical director of the Spina Bifida Association of America.

“Before my older brother and I were born, my father had a mid-thigh amputation due to a bone tumour. He went through years of rehab and struggled with that,” Brei explains. “With that, my parents had the goal that I should not be coddled, that I should be doing things. When I learned to walk, my mobility wasn’t as impacted as others with spina bifida. That helped me in terms of schooling.”

Today, as a developmental paediatrician who consults with families with children with spina bifida, Brei tries to keep the focus on the child and the goals they want to reach, though at times he positions himself as an example.

“When you have spina bifida, and you’re talking to families with spina bifida, what you say has more credibility. I talk to them about medical issues, but focus more on what’s happening with school. Families are concerned about the future, what is adult life like, what are the challenges they will face and how will they navigate that. Do they have friends? Are they learning skills they need to know to be adults? Can they go to college, what kinds of jobs can they have? The families bring up more of those long-term worries than the immediate medical ones.”

Brei also stresses the importance of building self-esteem and self-confidence, because too many families get into the habit of doing too much for their children with spina bifida. It wasn’t until college that Brei’s social life improved, and it also opened his eyes to the possibility of becoming a physician.

“I thought about doing medicine in high school ... but the percentage of individuals with disabilities who get into medical school is extremely small. In the US it’s 0.1 per cent.”

Brei advises families to have people such as teachers or adaptive sports coaches around to give support.

Getting into medical school was like winning the lottery, but that’s when the real hard work began. “Once you get in, everyone is on the same level. And doing the residency was physically challenging for me. You just slog through it,” he recalls with a chuckle, his crutches leaning against his chair.

A big advocate for getting children with spina bifida integrated into society is Dr David McLone from Chicago.

“It is not easy to raise a child. It is significantly more difficult to raise a child with spina bifida,” McLone says. “Our societies judge us on how we take care of our children, how we take care of our weakest individuals. Our children are our future. And there are a lot of children who could participate in that future and don’t because of the problems and barriers in their way. What we’re trying to do is get those barriers out of the way.”

In 2010, McLone set up Camp Independence in Chicago, which he describes as a “boot camp” for children with spina bifida to learn to look after themselves.

Each child is paired with a counsellor, who ensures they are safe. The children must do everything for themselves, though, no matter how long it takes, such as putting on their clothes and catheterising themselves. A psychologist is also on hand, to offer suggestions on how to make friends.

There are about 16 children at each week-long camp session. At the Hong Kong conference, McLone played a promotional video showing the children playing basketball, kayaking and even zip lining.

“When they leave camp, they have a whole bunch of friends on Facebook and they communicate with each other for the whole year,” McLone says.

It’s not all fun and games – the children learn basic daily living skills, including doing the laundry, cooking if they are older, and making peanut butter sandwiches if they are younger.

For young people studying in college or working, McLone founded Anixter Village, also in Chicago, where 21 young adults live in wheelchair-friendly apartments and learn to make the transition into the community. However, he jokes, they enjoy the facility so much that they won’t leave, so he may have to build more Anixter villages.

In the meantime, McLone is grateful to MedArt for its donations to Camp Independence, even though there aren’t any children from Hong Kong or China attending yet. Perhaps it’s time to set one up in Hong Kong.

“If we had a camp it would be good,” Ngan says. “But the numbers are so small that maybe we’d put them together with [children with] other diseases, or maybe even send them to Chicago or send counsellors there to train.”

This article appeared in the South China Morning Post print edition as: